A Father’s Story
It was twenty-five years on January 18, 2021. Twenty-five years since we said “hello” and “good-bye” at the same time to a baby who didn’t quite make it. Didn’t make it long enough to survive and didn’t make it with enough of himself to survive. We all need a brain, and he didn’t have one. And wouldn’t have one, no matter how long we might hope and wait.
It was the saddest time. I am one to feel deeply but not one who has many tears. At least before. That time I had more tears that any other in my life. When we came home from the level II ultrasound where the diagnosis was made and when I rocked him in my arms. So many tears. Something opened up in me that has never fully closed. More emotions now come to the surface. More times when I can feel my throat tighten and my eyes begin to fill. Not a bad change, just different. He was in this world for just a moment, but his consequences live in my heart and head to this day. Doubt that a day goes by that he doesn’t cross my mind. A pretty big impact for someone who didn’t quite make it.
My working days are filled with grieving people. Talking with them, listening to them, talking about them, writing about or to them, reading about them. Not all, but many, of them are grieving parents. I try to imagine their experience knowing that such imaginings are always imperfect, incomplete. My own experience and grief have expanded my imagination. They have provided me an additional little window into the grieving world of others, a window that wasn’t there before. In many ways, it’s not much, but it has made a difference for me. Sometimes I share just a small part of my experience, and then I can see it making a difference for others. A look that says, “Oh, you know a little about this, too,” and my responding look says, “Just a little…tell me about yours.”
Those who have lost children know things the rest of us do not. They know deeper levels of bitter and of sweet. Through the absence of presence, they know more intimately the boundaries of connection. They know more about what can be survived. And now I know a little more, too.
He didn’t have a brain and his head was misshapen under his little knit cap. But for whatever reason, when I think of him the images that come are not his head but his hands and feet. They looked perfectly formed in their maroon reality of less than 20-weeks gestation. There’s some unconscious wisdom there, I think. Focus mostly on what was present rather on what was absent. What we had rather than what we lost. Visit the grave any time but don’t set up a tent and live there.
A number of years ago, I was moved to write about my experience as Baby Kerry’s father. Looking it over, it still fits. Sharing it with you, one parent to another.
Everything Reminds Us of Baby Kerry
After our daughter, Lora, turned two we decided that it was time to try for a second child. We were fortunate and it wasn’t too many months later when the pregnancy test came back positive and we began planning the bedroom for child number two. Lora was a book lover and we had these illustrated children’s books based on the books by Laura Ingalls Wilder. Each one started with listing the members of the family—Pa, Ma, Mary, Laura, Baby Carrie and their good ol’ bulldog, Jack. As the pregnancy developed, Lora started referring to the baby growing in Mommy’s tummy as “Baby Carrie” and we often did the same.
Not quite midway through the pregnancy my wife called me at work on a Thursday morning passing on a worrisome report from her doctor. Her maternal alpha fetal protein level was high—so high that the doctor wanted to repeat the test to check the accuracy of the results. I was in a pediatric oncology treatment team meeting where I filled the role of social worker. After the meeting I contacted the medical library at the hospital where I worked to get some articles about what could happen with an elevated maternal alpha fetal protein level. The repeated level came back even higher and over the weekend we read the articles and were not comforted. The articles talked of neural tube defects, significant disabilities and even death of the baby. My wife and I were already challenged with living examples of what can go wrong in the development of a child in our jobs. Each month I met three or four new children diagnosed with cancer and my wife worked as a teacher in a preschool for children with a wide array of disabilities. Now we wondered if we would be joining the club of parents of children with disabilities or life-threatening illnesses. Would it now be “us” among the “them”?
Monday came and we moved to the next step of a level II ultrasound. I stared at the blurry screen looking for signs of anything. My wife could not see the screen but she could see tears in the eyes of the ultrasound technician who watched the screen and left the room to get the doctor. After looking himself, he assured us we had done nothing wrong but that our baby had anencephaly—our baby had and would have no brain and this condition was obviously not compatible with life. Our options were three—dilation and curettage, inducing labor and then delivery or continuing the pregnancy to term. We went home in shock, cried together and called our families and friends. The next day my wife began to have physical complications and we chose to induce labor and deliver.
Wednesday night we packed and prepared to go to the hospital and we searched for words to explain to now three-year-old Lora about what was happening. We told her that the baby was sick and the doctor needed to get the baby out of Mommy’s tummy anticipating that the post-hospital conversation would be that the baby was too sick and the baby died. Our pastor came to the house and we all sat on the floor with a few friends as she prayed with us and anointed our heads with oil and blessings for the experience to come. Arriving at the hospital on a cold winter night, I left my wife in our room and went down to complete admissions paperwork. In the elevator a stranger saw me as a young man in a hospital where many babies are born and said to me, “I know why you’re here.” I tried to smile and nodded but thought, “You have no idea why I’m here.”
Baby Kerry was born late the next morning. We didn’t know if it would be a boy or a girl but agreed that either way the name would fit (although the spelling would change). He was as big as my hand, burgundy colored with perfect hands and feet and missing a brain. As my wife took her well-earned sleep, I rocked and sang him songs that I had sung to our daughter—songs of faith that I had learned from my parents and grandmother. His lungs were not developed enough for him to breathe but his tiny heart was beating and did so for about an hour and a half. Against my tendencies and history the tears flowed freely as we shared our brief time together. I knew that there could be someone like me (in my professional life) in this hospital—someone who was called when bad things happened—but I did not want to share this experience and thankfully no one came.
Kerry was cremated and we spread his ashes in the memorial garden at our church following a memorial service Sunday afternoon. Winter weather and icy roads almost kept family away but they made it to stand by and give witness. My wife and I read from a book of prayers in the service and asked that a baptismal song be sung. “See this wonder in the making, God’s ownself this child is taking…”
I heard this song again when I was back to work in the hospital. My family loved music and my parents knew many songs. Growing up it became habit to come up with a song to fit whatever was happening at the time. It was like continuously living in a musical. When I returned to the hospital I was on call one night when a baby died. When the family expressed a desire for pictures to be taken of the baby, I walked down the hall and stairs to get the camera. On my way back to their room I became aware of the baptismal song playing in my head and I wondered how long it had been there. It reminded me of the dark humor of my unconscious when Kerry was born—then the song that came unbidden was from the Wizard of Oz as the scarecrow sings, “…if I only had a brain...”
In the spring we planted a tree in the backyard in Kerry’s memory. While planting the tree I explained to Lora that the tree would remind us of Baby Kerry. Lora replied matter-of-factly, “Everything reminds us of Baby Kerry.”
It’s been twelve years since we said hello and goodbye in the same breath to Baby Kerry. Each year Lora and her four-year-younger brother, Noah, help put Snow Babies ornaments on the Christmas tree in Kerry’s memory. When someone asks how many children we have, I almost always answer “two” but in my mind I’m thinking “two and a half.”
Not too long ago Lora asked if Kerry had lived would we have had Noah. Her memories of Kerry are few and fuzzy but her experience of Noah has been deep and affectionate. I replied that we had planned to have two children and so it was unlikely that we would have had more than two. She thought about this and replied that maybe it was a good thing, then, for otherwise we wouldn’t have Noah. Sometimes I wonder the same thing.
Greg Adams is ProgramCoordinator for the Center for Good Mourning and Staff Bereavement Support at Arkansas Children’s Hospital. The Center for Good Mourning includes grief support groups for children, teens and families, community outreach education and an electronic grief/loss newsletter, The Mourning News.